[pammyd]

Hi everyone:

Last month I came to this forum exahusted after 2 yrs of suffering without a diagnosis. I shared my pain and my frustration. Some of you shared with me that you had been diagnosed with Lupus through a skin biopsy, and that other than that your blood work always came back normal.

I shared this with various rummys, but they said it was impossible to have a prefectly clean bloodwork as I did, and have Lupus at the same time. needless to say I didn't listen.

A few weeks ago I found a dermatologist that would biopsy my butterfly rash on my face. I just got my results today. POSITIVE FOR LUPUS!!!

I don't understand why doctors kept telling me that it was not possible to have Lupus with normal blood works, and why doctors are not going directly to skin biopsies when they can see all the markers on someone but can't get the positive results off the bloodwork. Why do they act like they don't know?

I will have an appointment with my dermatologist on Wednesday to go over my results more thoroughly and I guess begin some kind of treatment for my rashes. Which I have been lucky are not that bad.
My worst symptoms are physical, fatigue and pain, are my worst enemies.

Anyway, I don't know if to celebrate or cry.

I now have to process this and the realization of what I have to live with is just beginning to set in. I have known that I had Lupus for a year, but the absence of the diagnosis helped me to keep a doubt alive. I had not yet accepted it because I kept being told that it wasn't Lupus.

I hope that now that they know for sure what it is that I can get the right amount of treatment and at least have more good days than bad, as I do now.

Thank you all who shared your experiences with me to help me to do this and get to a diagnosis. I more grateful than I can express in words!

pammyd

 

[confused1]

Hi Pammy, I don't know whether to welcome you to the "club" or to commiserate with you.....Either way, I'm glad you found your way here. This is a good place for support and information.

You are right about the need to process all the new feelings that a definite diagnosis brings. I have found that I have cycles of acceptance that crash right back into anger or grief. Be gentle with yourself. And remember that the people around you will also be dealing with a whole variety of emotions.

Good luck, and come back often. The chat room is a wonderful place. Hope to run into you there sometime soon.

Hugs,
Sunny

 

[Katharine]

Hi Pammy,

I am so glad that you were finally able to get some answers...and at the same time so sorry.

Has your dermatologist mentioned starting you on plaquenil? I hope he has and also hope that once it kicks in (it takes a while, often 3-6 months) it really changes life for you.

The diagnosis process IS complex. I think that more rheumies should try the skin biopsy. The problem is that a negative biopsy doesn't always mean no lupus either.

As for the rheumies that say that it is impossible to have lupus with clean bloodwork - unfortunately there aren't enough real lupus specialists out there. My rheumy was fixated on blood work too. Hopefuly through me, she has learnt a little

Do keep us posted and don't hesitate to come and ask questions here,
hugs to you,
:grouphug2:

Katharine

 

[bridie]

i was undiacnosed for ten years people kept saying i was lazy. i new something was wrong so when i was diagnosed i felt relieved it shut up all those people who said i was lazy . so you go girl.

 

[halfpintfl]

:hehe:Hi there Pammy, Well, at last it has happened. You have a diagnosis. The only thing that I can think of right now is for the Dermy that dx you, can he referr you to a different
Rheumy, and write a letter to the Rheumy that he did the biopsy, what he found, and that it is his professional
opinion that you have Lupus. He can hand that letter to you to give to the Rheumy. I will be very honest here, I do
not know if it HAS to be a Rheumy only that makes the dx, or if it can be the Dermy, I don't know, but I thought I would bring it up ahead of time. As far as getting your head around this lupus thing now, when I was dx, I just went about my business thinking nothing of it. Then , about a year later, it hit me, and I didn't know what to do, so I began reading and educating myself. I am very glad that you have finally reached a decision, welcome to our lupie home, remember that we are always here for you.:wink2:​

 

[sam101360]

HI:

Way to go pammy...I know how strage that sounds, butyoiu know what I mean.

I was initially Dx via a skin biopsy, and after 5 years of worsening symptoms and mild kidney involvement, I still have no real positive bloods.

You can see by my list of dx's that I am lucky to have a rhumy who treats me dispite the non-positive bloods. I am classified as Serum Negative Lupus.

I do constantly test positive for APS, I have had one positive ANA, occasionally low C3 & C4, high CPK's...but no real lupus markers.

Welsome aboard and visit us often!

Stephanie

 

[Mrs M]

Hi Pammy

Hope you are well and I just wanted to say that reading your post kind of gives me hope that soon I too will get answers.

Well done you for sticking with things and getting answers that you can now hopefully get your head around. I hope you recieve the medication you need and that things improve for you. Please keep us informed on how things go with the meds and the Rheumy.

Take care
Mrs M x